WHY DO YOU NEED MORE information from
us? When will concrete benefits result from our time?" an Iraqi woman
sighed in frustration. She was living in Amman, Jordan as a refugee and
had been asked several times in the last few months about the mental health
problems of Iraqi refugee families by organizations who had come knocking
on her door.

This is just one example of the burnout
among individuals who are visited by multiple research and evaluation teams;
teams that do not coordinate with each other and may leave without bringing
tangible benefits to the affected population.'I cannot provide for my family.
I will agree to anything to get some food on the table," an Iraqi
man exclaimed in desperation while giving informed consent to answer a
few research questions about the local Iraqi situation. His comments provide
another example of the complex cultural and sociopolitical context that
can compromise basic principles of conducting ethical research, such as
providing "true informed consent."

In situations like this, potential participants
may expect potential benefits and feel pressure from their families or
communities to consent. People may also feel that putting their names on
a document might put them at risk. There are also other potential ethical
challenges. The experience of a home-based study that sought to assess
individual levels of mental and psychosocial symptoms in a refugee community
is illustrative. In such a study, chances are good that researchers encounter
people suffering from severe to moderate mental health disorders. In this
particular case, as part of a basic safety assessment to determine whether
the beneficiary was at risk to self or others, the interviewer asked, "In
the last two weeks, how often did you think of ending your life?"
The response from the 15-year-old girl taking part in the study was a teary
confession of having attempted to end her own life a number of times. It
is unethical to ask such a question without having a systematic approach
of referral for participants who may present with severe, or common, untreated
disorders, or who are a danger to themselves or others. These examples
illustrate potential ethical challenges when conducting mental health research
in humanitarian settings. Indeed, such research can have a variety of unintended
negative consequences. For example, interviewing vulnerable groups (e.g.
survivors of rape) can put them at risk for further stigmatization and
discrimination by their communities and expose them to security risks.
Conducting mental health assessments and subsequently labeling specific
individuals and groups as "traumatized" or suffering from specific
mental disorders can foster feelings of victimization and disempowerment.
Moreover, measures to assess mental health problems have often been developed
in Western settings and may yield misleading information. Those instruments
define problems and symptoms that may be inappropriately narrow, may not
fit with culture-specific expressions of distress, and may preclude participation
of the affected population in describing their own challenges and needs.
Traditional institutional review boards of academic institutions (the bodies
charged with assessing proposed research methods) often are not prepared
to weigh the complex ethical issues involved in humanitarian contexts.

Does this mean we should abandon the
idea of conducting mental health research among populations affected by
conflict and crises?

A recent report from the 2009 Harvard
Humanitarian Action Summit argues to the contrary. While research in such
settings raises ethical challenges, it can be argued that not collecting
such data can be considered unethical as well. The evidence base on mental
health and psychosocial interventions in diverse cultural settings is still
scarce and there is a strong need for developing best practices. For example,
some psychological interventions, such as single-session debriefing after
potentially traumatic events, have been found to be harmful. Therefore,
collecting qualitative and quantitative data on the effects of mental health
and psychosocial interventions is arguably essential for developing best
practices and guidelines, and to ensure accountability in this field.

But can such data collection be considered
research? And should such assessments be subject to the same ethical requirements
that academic researchers have to follow? "This is not research. This
is a needs assessment," a field officer said defensively in response
to his supervisor's concern that some ethical considerations were not taken
into account during a key informant interview. This example leads to questions
such as: "Where is the border between reporting, assessment and research?"
and "Do we avoid ethical dilemmas by calling research something else?"
Research is designed to produce new knowledge-be it to structure or identify
new problems, develop solutions to a problem or to test the feasibility
of a solution using empirical evidence. In this respect, we believe that
the ethical requirements for conducting mental health and psychosocial
research apply to any form of information gathering that involves the participation
of affected populations.

Given the importance of research and
evaluation on one hand and the potential pitfalls and complexities of humanitarian
environments on the other, it is important to develop guidance for organizations
working in this field. The Working Group on Mental Health and Psychosocial
Support in Crisis and Conflict, which was convened as part of the Harvard
Humanitarian Action Summit, has described ethical challenges faced by mental
health researchers and offered guidance and recommendations that build
on the Inter-Agency Standing Committee Guidelines on Mental Health and
Psychosocial Support in Humanitarian Settings. The group, which includes
International Medical Corps and other international NGOs as well as academicians
from various geographic regions, has formulated recommendations spanning
the themes of purpose and benefits of research, issues of validity, neutrality,
risk, subject selection and participation, confidentiality, consent and
dissemination of results. The group believes there should be "no survey
without service" and "no service without survey"- underscoring
the commitment to benefitting the affected population and the need for
research and evaluation of interventions.

There has been some exemplary emerging
research in this field that takes into account such considerations and
engages affected communities in partnerships to discuss their priorities
and to foster local agency. The working group from the Harvard summit views
its report as a living document and continues to seek input from individuals
and groups from various geographical regions, especially those from low-income
countries. The goal is to facilitate high quality research, evaluation,
and assessments that take into account ethical considerations, involve
the affected populations and contribute to tangible benefits and best practices.